What is a urostomy and how do you deal with it?

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A patient who did not know what to expect walks you through the process (with photos)

By AnneMarie Finn

According to UOAA information on this website, a urostomy is “a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit. Reasons for surgery include bladder cancer, spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.” Great definition, but what does it mean? When I was told I would need a radical cystectomy, leading to an ileal conduit I had no clue. The following is my experience.

Because of bladder cancer, my bladder needed to be removed and a new way to pass urine created. Due to the location of the tumor, my urethra was also removed so my surgeon and I settled on an ileal conduit, a conventional urostomy. It is called ileal conduit because a piece of the ileum, or small bowel, is used to make a passage for urine to go from the kidneys and ureters out of the body. The other end is brought out through a hole in the abdomen where urine exits through a stoma (more on that shortly). It is known as an incontinent urinary diversion because you cannot control the urine. As a result, a collection bag or pouch hangs from your abdomen to catch the urine. The pouch is not visible as it is worn under your clothes. Still not clear? It wasn’t for me either.

A couple of days before surgery, I met with an ostomy nurse at the hospital where I would be receiving my surgery. She marked where the stoma would be placed. She saw how I wore my pants. She had me sit, stand, lay down, and bend over, She drew a mark with a marker about 2.5 inches to the right and 3 inches down from my navel and covered it with a waterproof dressing. This would guide the surgeon as to the optimal spot to place the stoma. The surgeon had the ultimate call on where the stoma went, depending on the surgery itself. I also met with a nurse for a pre-op appointment. They went through the typical exam and then explained the ERAS protocol to me. ERAS, Enhanced Recovery After Surgery, is used at my hospital for radical cystectomies. They no longer use a bowel prep. You drink a high carbohydrate drink in the hours prior to your surgery. They get you up walking and feed you by the day after surgery. The goal is to keep your bowels working. This reduces the length of hospital stay and the number of complications.

This is major surgery. It is considered one of the most complex cancer surgeries performed. My surgery took 7 hours. They removed the bladder, urethra, uterus, cervix, fallopian tubes, an ovary, and some lymph nodes. When I woke up, I had a bag, a large incision with more than 30 staples and a Jackson Pratt (JP) drain on my abdomen. I also had intermittent pneumatic compression (IPC) devices on my legs, my spa legs. Blood clots are a common side effect of a radical cystectomy. Because of that, I also received daily prophylaxis blood thinner shots in my belly for 30 days. I was not in a great deal of pain which was easily managed with Tylenol. I was definitely weak, but otherwise ok. I went home in 4 days, on my own with my urostomy.

The stoma is the badge of the urostomy. My stoma is about one inch in diameter. It is pretty round, It sticks out. It sometimes moves in and out. You can’t feel it. It has been described as looking like a rosebud. It is red. This is where the urine exits the body. You have no control over it. Sometimes it will also expel mucus. Some people name them. I did.
Rudolph, my red, round stoma

You use a urine collection pouch, or bag, to catch the urine. The hospital will send you home with some so you do not need to have them on hand before you get home. There are many different brands. In fact, until I found what worked best for me, I tried most of them. My pouch is about 8 inches long, 6-7 inches wide and has a 1-2 inch closable spout on the bottom. It also is a deep convex bag as my stoma does not stick out very far and it helps protect my skin. I prefer the clear bag so I can see the stoma and center it when I put it on. There are both one and two-piece bags. I have used both. One-piece pouches have the bag and a skin barrier attached. The skin barrier has adhesive, also called a flange or wafer, that sticks to your skin. There is a hole that goes over the stoma. Some are pre-cut, some are not. If not, you must cut a hole slightly bigger than your stoma before putting it on. There are also two-piece systems. The bags are separate from the skin barrier. They are attached by a Tupperware-like seal. You can leave the skin barrier on and take off the pouch.

Front and back of 1 piece, deep convex pouch

I change my pouch every 3 days. I like to remove the old pouch and take a shower with it off. I feel so free. To remove, I use an adhesive removal spray and wipes to clean the skin. I shower and wash the area around the stoma with soap and dandruff shampoo, which contains Zinc. Some people wash with a vinegar and water combo. If I change without showering, I just use plain water to rinse. After showering, I use a hairdryer on the lowest setting to dry the skin around the stoma so the wafer sticks to it. Drying your skin is important. I have some skin issues so I also use a skin barrier protective sheet, that I cut a hole to match the opening of the wafer, and a cohesive seal.

Protective Sheet with hole cut out and Cohesive Seal

Some people use powders, paste, barrier wipes, etc. I do not. It took a lot of trial and error to find what worked best for me. You need to find what works for you. One of the best ways to do this is to work with an ostomy nurse. They can help you navigate ordering and finding the best system for you.
At night, I use the urinary drainage bag they sent me home with from the hospital. For me, it works the best. There are several brands of night bags and even jugs. I put it on the floor next to my bed inside of a small wastebasket. This has been key as the drain has opened (or been left open) and the wastebasket collected the urine, preventing a rug catastrophe. I am a very active sleeper and I am not really hindered too much from my bag. I am able to sleep on my back, sides, and stomach. Don’t be afraid to sleep. People add their own tubing and tube placement strategies. Use whatever works for you. I also highly recommend a waterproof mattress pad. Mattresses are expensive. I also use the night drainage bag on long car trips. I don’t have to stop and use those disgusting public toilets. I even used it during the Avengers finale. I was probably the only person in the theater who did not have to get up to use the facilities during the movie! People were actually jealous.

Night Drainage Pouch

I honestly can’t even feel my pouch. I empty it every 1-2 hours, depending on how much I drink. Sometimes there is a “ghost” feeling where my bladder used to be making it feel like I have to pee. Ah, the good old days. It is actually a weird sensation drinking a lot and not feeling like I have to go. The bag is not noticeable under my clothes. I really do wear what I wore before surgery: jeans, sheath dresses, shorts, and bathing suits. I am still sexually active. Having gone through this experience with my wonderful caregiver, my husband, has brought us closer. Most importantly, I am cancer-free.

Annemarie Finn’s Story

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Bladder cancer and urostomy surgery do not stop Annemarie from living her best life.

I am a bag lady. I am highly educated and employed, yet carry a bag wherever I go. I don’t leave home without it. Because of bladder cancer, I have a urostomy. Like many other women, it took some time for my diagnosis. At 57, many of the symptoms I experienced were attributed to my age: menopause, UTIs, kidney stones, fibroids, etc. Thanks to the fibroids, I was scheduled for an ultrasound. It was my gynecologist who found the bladder tumor. She referred me to a urologist. In fact, she insisted. Her office called to make sure I followed through. I met that week with a local urologist. He did a scope. I saw him look at the nurse, concern written on both their faces. He started talking about surgery and apologizing for the diagnosis. In my naivete’, I had gone to the appointment by myself. I don’t remember him even saying the words, but I had bladder cancer.

Scans and a transurethral resection of a bladder tumor (TURBT) were scheduled for the following week. Usually an outpatient procedure, I was in the hospital for 4 days due to heavy bleeding after the TURBT. The tumor was large and the doctor couldn’t get it all but he thought it had penetrated the muscle. Unfortunately, the pathology was inconclusive so he did another TURBT the following week. The outcomes were exactly the same so we both decided my best chances were for a second opinion at Dana-Farber Cancer Institute in Boston. Throughout our discussions, he explained what my future might entail. It looked likely that they were going to have to remove the bladder and I would either have a new “bladder” or a bag. Quite honestly, I had no idea what it entailed, but I was horrified.

Dana-Farber is an amazing place. I had a whole team in place: a medical oncologist, an oncology urologist, a nephrologist, among others. The plan was an MRI to confirm the tumor’s pathology, a nephrostomy tube, chemotherapy and, if the cancer had not spread, a radical cystectomy. If it had spread, I would not need surgery but would be eligible for palliative care. Who would have thought surgery is the best case scenario. Due to claustrophobia, and despite anesthesia and Ativan, I moved so the MRI was inconclusive. I needed another TURBT. Thanks to my new amazing surgeon, the tumor was removed and the passage to my kidney was cleared. The pathology of the tumor showed no spread to the muscle and an ultrasound showed no more kidney hydronephrosis. Even better, I would no longer require chemotherapy. I did try immunotherapy with BCG but it did not work. The cancer was aggressive so we had to treat it aggressively. My radical cystectomy was scheduled for January 25, 2019.

It took me a long time to get there. I even asked what would happen if I did not receive the surgery. I would be dead in a year.

Wow, that was sobering. Because of the proximity of the tumor, I did not qualify for a neobladder. I would have to have a urostomy. Every time I talked about it, or even thought about it, I cried. I felt like I was going to be a freak. I offered my husband a divorce if he wanted one. I was devastated and frightened. I have learned that fear of the unknown and our imaginations are far worse than the reality. While so much of what had happened to me was out of my control, I did have control over one thing: HOW I handled everything. I decided knowledge was power. I was fortunate. My hospital had a class for urostomy candidates. For the first time, I was able to see an actual urostomy pouch. I was given hands-on instruction on how to change a bag. I met ostomy nurses (the best people in the world!) who would be helping me.

I decided I would be the one to handle my changes, right from the start. I would take control.

My surgery lasted 7 hours. I needed a transfusion but things went well otherwise. The surgery was not easy. People have described it as feeling like you were hit by a bus. I never really had any pain. It was easily managed with Tylenol. However, I was so weak. I eventually needed an iron transfusion. The one thing I wish I had gotten for my return home was a shower chair. Showers were the worst for me. It took me two months to feel more like myself and another month before I felt ready to return to work. I also cannot say enough about getting a good ostomy nurse. I have been described as a delicate flower (surprising to those who know me). I have very sensitive skin. The nurse was a Godsend to me in trying to manage all of my skin issues. After my visiting nurse visits ended, I continued to see the ostomy nurses at the hospital where I had my surgery. It took a year but, through trial and error, I finally have gotten a handle on things.

I had a few leaks. They were usually caused by user error. They were not the huge floods I expected. Honestly, none of this was as awful as I expected. So many people said this would be my “new normal”. I can’t stand that term. I call it my new reality. There isn’t anything normal about having a urostomy. However, it is very doable. I now wear two-piece bathing suits. I didn’t before. I am wearing the same clothes as I did before. I can kayak, hike, ride my bike, swim for hours, anything I did before. I was here for the birth of my first grandchild. I am back to work, a job that I love. I am not shy about talking about my bag to others. It is not a secret. In fact, I am kind of proud of it. I am alive and life is good.

Ostomy Myths vs Reality

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Let’s Debunk These Common Ostomy Myths

 

 

 

After ostomy surgery, you may find helpful tips from other people living with an ostomy in online communities, support groups, forums and more. Weeding through the fact and fiction can be difficult. We asked certified ostomy nurses to outline some of the most common myths they hear to provide you with the truth about living with an ostomy.

 

Myth: Only use the ostomy pouching system that you were fitted with in the hospital or doctor’s office.

Fact: In the weeks and months following ostomy surgery, you may find your stoma and body changing. In the first few weeks and months post-surgery, your ostomy pouching system may need to be changed also.

 

Myth: All ostomy products are the same. It doesn’t matter what type of pouching system you wear.

Fact: There are a large variety of ostomy products available to fit the needs of each person living with an ostomy.

 

Myth: Your stoma should not change size a few months after surgery.

Fact: In the weeks and months following ostomy surgery, your stoma may change in size and appearance.

 

Myth: Having skin irritation is a normal way of life with an ostomy.

Fact: If the skin around your stoma becomes damaged, it could be painful and lead to infection. Prevention is the key to maintaining both healthy peristomal skin and your comfort.

 

Myth: If you have an ostomy, your significant other will not love you the same way.

Fact: It is common to have anxiety about relationships following ostomy surgery. Be open and honest with your partner about any concerns you have. Remember, having an ostomy is nothing to be ashamed of.

 

Myth: Odor is a part of life when you have an ostomy.

Fact: You will become more comfortable with your ostomy pouch over time, and will gain confidence in its ability to retain odors.

 

Myth: Now that I have an ostomy, I am no longer able to enjoy the foods I love.

Fact: Right out of surgery, you may be more sensitive to foods than you will be in six months. Slowly add different foods to your diet, and pay attention to your body’s response.

 

Myth: I have a colostomy or ileostomy so I shouldn’t be passing anything from my rectum. 

Fact: The colon or rectum may produce mucus even after ostomy surgery. If you have questions about your output, contact your healthcare professional.

 

Myth: I can’t get my pouch or wafer wet, which means I can’t enjoy water activities or bathe with my pouching system in place.

Fact: You can shower, go swimming, or even get in the hot tub with your pouching system in place. If using a pouch with a filter, cover the filter with the covers provided.

 

Myth: Don’t shower without your ostomy system off.

Fact: You can shower with or without an ostomy system in place.

 

Myth: An ostomy prevents you from wearing stylish, form-fitting clothing. People will be able to see that I have an ostomy.

Fact: Before you had ostomy surgery, did you notice an ostomy pouch on other people in public? Probably not. Try a wrap or special undergarments to help conceal your pouch and increase your confidence.

 

Myth: Insurance doesn’t cover ostomy care, so I am paying out of pocket for my supplies.

Fact: Contact your insurance coverage provider to understand what your insurance plan covers and pays for ostomy supplies.

 

Myth: You should rinse and/or reuse your pouches.

Fact: It is not recommended to rinse or reuse ostomy systems, pouches or wafers. Water can make the barrier break down faster and damage the filter of the filtered pouches.

 

Myth: People living with an ostomy cannot fly, because the cabin pressure can cause the pouch to fail.

Fact: People living with an ostomy can fly, ride in a car, or use any other mode of travel.

 

More information from ConvaTec

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Dating With An Ostomy

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Don’t Let Your Ostomy Stop You From Dating!

Easing back into the dating scene may feel scary and impossible, it’s normal to want to take your time and get comfortable with your daily routine before tackling dating. It is possible, however, and going on dates might actually help to increase your comfort and confidence.

Finding the Perfect Date Location

When you are ready, choose a location that is familiar to you. If it’s not too far from home and you already know where the restrooms are, you will feel more in control of the situation and it will ease your mind. You can choose to keep the first couple of dates casual and relatively short to ensure your comfort.

You might even want to get together with a close friend who knows about your ostomy and go out shopping for a new outfit, something that will make you feel positive and bold. If the location of the date is unknown to you, use this time to also stop by and get a feel for the environment. It’s fine to want all the information ahead of time so all you need to worry about during your date is seeing if there’s a romantic spark.

Are Things Beginning to Heat Up?

Of course if things are beginning to heat up with someone, you will probably want to think about sharing about your ostomy. Remember that it’s completely up to you when and how to do this. It may be helpful to write down what you want to communicate beforehand to help with your confidence and directness. Feel free to keep it short and then offer to field some questions that your new partner might have. Remember, if a romantic interest can’t accept you as you are, they are not the one for you.

More Resources

If the idea of ostomy sex makes you nervous, it may be helpful to talk to someone who has been down that road before. Speak with someone who has experience living with an ostomy to find out how they navigated similar situations. Your nurse may have information of local networks or support groups. You can start your search to meet others in your situation on our website.

Find our additional information on intimacy and your stoma.

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Maintaining Healthy Peristomal Skin

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How to Keep the Skin Around Your Stoma Healthy

 

 

Keeping the skin around your stoma, or peristomal skin, healthy is important. You can steer clear of many complications by following these simple suggestions from:

Bath and shower tips:

  • You can bathe and shower just as you did before surgery, with your pouch on or off—the choice is up to you.
  • Because soap residue can cause your skin barrier to lift, avoid oil-based and moisturizing soaps.
  • Soap and water will not flow into the stoma and cannot damage it.

Choose a well-fitted ostomy barrier:

  • To help keep the skin around your stoma healthy, it is important that your skin barrier fits properly. Choose a well-fitting pouching system to help prevent irritating stoma contents from coming into contact with your skin.
  • Your ostomy nurse can teach you how to use a measuring guide to determine the size of your stoma and select a cut-to-fit, pre-cut ormoldable barrier.
  • Your stoma size will change up to 10 weeks after surgery, so you will need to measure it periodically.
  • Changes to the abdomen caused by pregnancy, exercise, weight gain/loss or certain medical conditions may also require a new pouching system and/or size.

Changing your pouching system:

  • Make an easy-to-follow schedule for your pouching system. This will ensure your skin barrier is changed before the adhesive has eroded, reducing the chance of urine or feces coming into contact with your skin. Your schedule should be personalized based on your system type and the advice of your doctor or ostomy nurse.
  • At each skin barrier and pouch change, make a habit of looking at the skin around your stoma. Redness, swelling or a rash are signs of irritation. If you see any of these, or other signs of irritation, notify your healthcare provider.
  • Never rip or tear off your skin barrier. Instead, remove the skin barrier gently by beginning with one corner of the barrier and slowly pulling off the remaining adhesive. Adhesive releaser spray and remover wipes can make pouch changes easier and ensure clean skin, ready for your next skin barrier.
  • Make sure your peristomal skin is completely dry before replacing your pouch and skin barrier. Dry skin ensures a good adhesive seal and helps reduce the risk of fungal infection.
  • A skincare routine including skin barrier foam, spray or wipes can help ensure healthy, comfortable peristomal skin for years to come.
  • In hot, humid locations, consider using a pouch with a fabric backing. This will keep the pouch from sticking to your skin and causing skin irritation.

For more information click here.

 

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Ostomy Awareness Day: Ostomies are Life-Savers

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“Bottom line, I have my life back and I’m only looking forward.” – Josh Nelson

Ostomies are Life-Savers – and Coloplast is proud to be a part of helping spread the word on Saturday, October 5th for Ostomy Awareness Day!

For many people, it’s not often that intimate things – like an ostomy – are discussed openly … but at Coloplast, our passion centers around hearing real-life stories from people with intimate healthcare needs. As we listen, we strive to uncover unmet needs and respond with innovative product solutions to make life easier for people living with an ostomy. We bring this passion to listen, respond, and make life easier to work every day – and we’re proud to stand with the ostomy community in raising awareness of the amazing resilience of people living with an ostomy.

Do you live in the Twin Cities? Lace up your shoes and join our team for the Virtual Run for Resilience!

You, your family, friends, and pets are invited to join Coloplast employees, ostomates in the area, and their families for a “virtual 5K” run/walk/roll along the Mississippi River in Minneapolis, MN – starting at our US corporate office. Attendees should plan to arrive by 10:00 AM to gear up for the race. There will be groups of people both running and walking, so you can move at the pace at which you are most comfortable!

Before the run/walk/roll begins, we will have two guest speakers. Kiza Olson and Josh Nelson, who both have ostomies, will tell their stories, including how an ostomy was a lifesaver for them. Watch this short video from Josh* encouraging you to join us:

This event is open to anyone who wants to help support ostomy awareness. Looking for more information? Check out our Facebook event page. Feel free to join our team and sign up for the event at no cost on the Coloplast team page.

To help you prepare for the run/walk, brush up on some tips on sports and exercise with an ostomy on our Coloplast® Care site.

Don’t live in Minneapolis?

Visit the Coloplast booth at one of the 8 Run for Resilience events nationwide!

If you plan to participate at one of the run/walks held nationwide, make sure to stop by the Coloplast table and meet our local representative! We’ll be handing out free temporary tattoos so you can wear the “Ostomies Are Life-Savers” slogan proudly on your sleeve.

We’re proud to be a part of the effort to build awareness that ostomies are life-savers – and a key contributor to really feeling like you can “have your life back” is finding the right product fit. As bodies change over time – aging, gaining or losing weight, getting new scars or a hernia – it’s important to check that you still have the right fit. That’s why we developed BodyCheck: in 8 easy steps, this online tool will identify the best combination of product(s) to provide a secure fit to your individual body profile. At our booth, we’ll have information on using BodyCheck to ensure you still have a secure fit – and a free magnet reminding you to check your body as things change.

Take a selfie!

If you get the temporary tattoo or magnet –  we’d love to see how you display them! Snap a picture and share with us on social media with the hashtags #OstomyAwarenessDay #OstomiesAreLifeSavers  #RunforResilience

 

*Josh is a SenSura Mio user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

How Will You Celebrate Ostomy Awareness Day?

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National Ostomy Awareness Day is celebrated this year in the US on Saturday, October 5, 2019. At Hollister Incorporated, we are proud to stand with the broader ostomy community to show how we are #AllinforOstomy. We invite everyone to join together in spreading awareness or engaging in activities that can impact the day-to-day lives of people living with ostomies and their caregivers.

Participate in a Run for Resilience Ostomy 5K Event!

For some, the best way to celebrate and support ostomy awareness is to get out and enjoy the day, even better to do so together with the people we care about. In that spirit, we celebrate Ostomy Awareness Day again this year by supporting United Ostomy Associations of America (UOAA) as the exclusive Diamond Sponsor of the annual Run for Resilience Ostomy 5K events. The events help increase awareness about ostomy and continent diversion surgery and encourage positive dialogue. Bring family and friends with you to participate in one of these fun events nationwide. Many feature kids’ activities, a DJ, a division for people with ostomies, and awards. Visit ostomy5k.org to find a run near you. While you’re there, stop by the Hollister booth and say hello!

If you can’t make it to one of the live events, you can still participate by registering for a Virtual Walk, Run, or Roll at a location near you. Even a treadmill counts! This year Hollister Associates will participate in a virtual event near our Hollister Incorporated headquarters in Illinois, and at our distribution center in Stuarts Draft, Virginia.

Gearing up to participate in one of these events? Get in the mood with the All in for Ostomy playlist on Spotify.

Show off your Stoma Sticker on Ostomy Awareness Day or Any Day!

By wearing a “stoma” where people can see it, you can start a conversation, raise awareness, and show support for the ostomy community on Ostomy Awareness Day and every day. Place the sticker over your clothes on the lower right or left side between your navel and hip, where ostomies are typically located. Then, take a photo or video and share it on social media with the hashtags #AllinforOstomy and #OstomyAwareness. Because any day is a good day to support and celebrate ostomy awareness, Stoma Stickers are available for order year round! Visit stomasticker.com to order a free educational Stoma Sticker, shipped anywhere in the US.

Visit www.hollister.com/ostomyawareness to learn more!

 

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

Ostomy Awareness Starts with You

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It’s up to you. Will ostomy awareness, support and education stay in the shadows this year or touch lives and impact those in your community? Will you celebrate the resilience of people living with an ostomy and fight for those still in need?

If you want this shirt simply sign-up for any walk/run or the virtual option. Must order by Sep. 13 to get your size.

Ostomies are Life-Savers. It’s that simple, and that’s both the Ostomy Awareness Day theme and what will be emblazoned on the t-shirts of those gathering at the Run for Resilience Ostomy 5k awareness events September 28 and October 5 and 12, 2019.

You don’t have to run, or even walk a step, to support these charity events. It’s easy. If you’re not able to come out for an event (or simply like to sleep in) ­– donate to an event near you, or the worldwide virtual 5k event. You can also check out all the other ways to make a difference this Ostomy Awareness Day, Saturday, October 5, 2019.

Consider supporting that person who just had ostomy surgery in the past year and is seeking the confidence to get out in the world again. Attend or donate to the event of a double ostomate like Roxanne Camp, who despite countless surgeries, is still bringing ostomy awareness with a smile to her community in Arizona in the form of an Ostomy 5k fun run and a picnic open to all.

 

Phil Moyle in Spokane, WA started a fundraiser for this year’s Ostomy5k in Boise.

Start a fundraiser like Phil Moyle of the Inland Northwest Ostomy Support Groups and let your friends and family know why this cause is so close to your heart. Phil was touched by the passion of the Herrett family in Boise. They started a run for their two children who have ostomies in the hope they’ll be able to live in a world that will embrace their differences.

All around the country, those who are seeking empowerment over their health will be gathering with friends and family to walk, run or roll at an event near them or anywhere they want with the virtual 5k option. Most of the attendees typically do not have an ostomy, yet will be out on the streets to support you.  If you’ve never run before– consider this as motivation. The events are all beautiful park locations. Some of the event locations are simple fun runs while others are on a timed and certified courses that attract a handful of serious competitors. Check out www.ostomy5k.org for all the details.

Gather friends, your support group, co-workers or family and host a Virtual Ostomy 5k walk event and fundraiser wherever you want. We’ll send you t-shirts and race bibs and you can send us photos!

Consider starting a couch to 5k group with some friends (It’s easy with an app like this.). Walk with your support group, friends or family anywhere you want by signing up for the worldwide virtual ostomy 5k. We’ll mail you out a t-shirt and a race bib so you can be a real part of this national movement. If you don’t want a shirt, the event is free! 

You could plan on taking a fun trip to Nashville and meet fashion designer and survivor Manny Cuevas who is helping to organize the event there and is hand sewing ostomy pouch covers for top ostomates that complete the run. Run for those who are still battling illness and can’t host a run this year like Stephanie Urzi in New Jersey.

Lucky competitors may get an exclusive pouch cover from designer Manny Cuevas.

Support and donate to events hosted by dedicated ostomy nurses who have volunteered their time for you, such as Lara Leininger and Angela Richardson in North Carolina, Gina Day in Pennsylvania, Misty Edwards in Alabama, Deborah Nelson in Tennessee, and Amber Lords and Jessica Blakeslee in Idaho. They work all day with patients but still want to do more to create awareness in their own communities, and to benefit all people living with an ostomy in the United States.

UOAA’s national advocacy, trusted resources, and support groups nationwide help turn around countless lives. Event proceeds benefit UOAA as this is our major fundraiser.

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Thanks to our national sponsors who help offset the costs of the events and believe in this mission. They volunteer, have reps, products and information on hand. Exclusive Diamond Sponsor Hollister will have employees in Stuarts Draft, VA that will be running in solidarity. Gold Sponsor Coloplast’s Vincent Faiola, who is also a support group leader, is gathering the ostomy community for an event in Vancouver, WA. Silver Sponsors Byram Healthcare and Colo-Majic are excited to connect with you and support the cause. Bronze Sponsor Safe-n-Simple’s Michele Pitylack and Holly Loos are hosting an event in Michigan and promoting the event nationwide. Bronze sponsors ConvaTec will also be on hand at the events to answer your questions and new sponsor Osto-EZ-Vent is proud to be a part of this event. And thanks so much to our local sponsors who do so much for the community spirit of these events.

Walk or roll because you can. Run if that is your goal. Donate or fundraise if you have the means. Or volunteer at an event near you and cheer on others. We’re sure friends and family have encouraged you to support a charity close to their heart before ­– now may be the time to ask a favor in return. Ostomy awareness simply saves lives, and it needs to start with us, the time is now. Show the world we’re alive and why they should care.

Click Here to Register at an Event Near You

Click Here to Donate or Start a Fundraiser

Click Here for a T-shirt and a Virtual Walk/Run you can do Anywhere

Find Solutions to Problems That Can Occur With an Ostomy

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Many people with an ostomy find that once their stoma has settled and they are in a normal routine, they are able to live their life with few ostomy related issues. However, as you are adjusting to life with a stoma, you may experience some problems that are quite common. We have put together a list of some common ostomy related problems and solutions so you can be well prepared if and when they occur.

Many ostomates continue to live with stoma issues and problems unaware that there are solutions available to them. Learning how to care for your stoma and understanding these common problems will help you to find normalcy and routine after your surgery. Access to this information will help you to take charge of your life and increase your confidence.

Before we get into the common problems and solutions, it might be helpful to mention proper cleaning and application. With proper care of your stoma and the skin around your stoma you may reduce the risk of the below problems. Proper care begins with proper application. Make sure your barrier hole fits tightly around your stoma, and that the skin is clean and dry for application. When removing your barrier, it is important to lift it gently off of your skin while using your other hand to press down on your skin. Ripping the adhesive off quickly can cause redness and irritation that can lead to other problems. To clean your stoma and the area around it, use a soft cloth or towel and warm water. Be gentle when cleaning, as aggressive rubbing or wiping can irritate the skin. It is not necessary to use soap, as soaps can leave residue and irritate the skin. When changing your pouching system, it can be helpful to use a small hand-held mirror to see all around it. If there is leakage, use the mirror to check all areas of your barrier and stoma for gaps and creases. Once you’ve identified the problem area, it will be easier to address.

Leakage

Two of the main factors of leakage problems are: how you prepare your skin before you apply your barrier, and your barrier size. You should make sure to clean and dry your skin completely before applying a new pouching system. If you are having trouble getting the area dry, an absorbing powder might be a good solution for you. If your pouch gets too heavy and tends to pull away from your skin, or if your barrier does not fit correctly, a protective seal between your stoma and the barrier can prevent leakage and seal the pouching system.

Skin Problems

The skin that surrounds your stoma is called peristomal skin­—it should be smooth and healthy and look like the rest of your skin. If it is red or irritated, you should address the problem immediately. If you have problems with adhesive residue or are unable to get the area completely clean before application, you may want to try to use an adhesive remover.

Odor

New sound and smells coming from your pouching system can be embarrassing and induce anxiety. Many new pouching systems have filters to neutralize the odors caused by gasses in your pouch. What you eat can have an effect on gasses you produce. It is recommended to avoid carbonated beverages and limit high-fiber foods. If the filter in your pouch gets blocked, you may experience ballooning. Ballooning happens when air from your stoma cannot escape the bag and it fills up like a balloon. Depending on the type of system you are using, you may want to release air from it throughout the day. If the odor is strong when you are changing your pouch, you may want to try a lubricating deodorant which can help mask, the smells during a pouch change. Simply place 6-10 drops into the pouch when you change and empty it and spread it around inside the pouch by rubbing the inner sides together, avoiding the filter. This helps the output to make its way more easily to the bottom of the pouch.

Should you need more assistance dealing with a problem you are having with your ostomy, consult your healthcare professional. For more assistance and personalized support, check out Coloplast® Care, which is an ongoing comprehensive support program that gives people with an ostomy support throughout their life.

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.